Thank you for your feedback. I have locked this thread so that all responses can be made on the one thread. My apologies that you were unable to do so, which is why i imagine you replied here. That error has now been rectified and i have copied your response below into the other thread.
It all seemed to be really hastily put together with no real opportunity for those of us with MBC to actually take part. As I have said before 'Secondary' makes us sound less important and personally I find it a bit insulting, but that is just my view. Call it what it is ... Metastatic Breast Cancer. Until it is properly differentiated and everyone is made aware of what MBC is then we will continue to sink without trace. If people are not aware of MBC then they really aren't aware of what breast cancer really is.
As we actually make up 30% plus of the BC Community why do we get one day. Why can't we have a separate day and a separate month when eveyone is not obsessed with Pink and Survivorship? I have suggested before that the 4.4.2014 would be an ideal day for Stage IV, Metastatic Breast Cancer.
We need to have Metastatic Breast Care Nurses trained and in all hospitals where cancer is treated. I found out yesterday that the hospital where I am treated now has FOUR BCNs and still nothing for Metastatic. Why isn't one of them trained to deal with MBC? Isn't it bad enough to know that no one is even going to try to help you survive? Or as my first oncologist put it that they might think of doing something when I got symptoms; aka go in the corner and die quietly!
The mental aspect of dealing with MBC can be extremely tough and there is virtually no help. Everything about Stage IV cancer seems to go from being diagnosed and making treatment choices to end of life. For some of us there are years of living in limbo feeling that we are not accepted to the world of Pink Survivorship and that we mustn't mention it ot anyone in case we upset them? How bizarre is that? With the likes of Jennifer Saunders (to get publicity for her new book, surprise, surprise) accusing us of wearing cancer like a Badge, what are we supposed to do? It always seems to be don't upset the Early Stagers because they live with such terrible stress and no one wants to tell the truth of what Breast Cancer is really about.
I really seriously doubt that anything will change. I have just lost faith in any of this and right now nothing seems to have much point. I think I would rather be dead, it would make life a lot easier for everyone else. But in many ways this is the crux of the matter. Where is our support? When are we allowed to be proud of still being alive? When are we going to stop being an inconvenient truth?